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WHAT IS DWARFISM EXACTLY?

When I taught seminars to middle and high school students, I would ask the class who had ever seen a dwarf. Usually more than half the students raised their hands. Then I would ask who had ever seen a dwarf in books or the media. Invariably the entire class raised their hands. However, a lifetime of strangers’ questions has convinced me that few people know the facts about dwarfism.

First of all, there are hundreds of types of dwarfism you can learn about here. Dwarfism caused by growth hormone deficiency is often “curable” today through the use of hormone supplements. Most forms of dwarfism, however, are skeletal dysplasias, whereby certain growth plates do not know how to interpret growth hormone. My diagnosis – achondroplasia – is the most common type, accounting for 70% of all cases and occurring in 1 in 40,000 births. It is followed by diastrophic dwarfism and spondyloepiphyseal dysplasia congenita (SED congenita).

In pop culture terms, Peter Dinklage (Game of Thrones, The Station Agent, Elf, Death At A Funeral) has achondroplasia. Warwick Davis (Harry Potter, Willow, The 10th Kingdom) and Danny Woodburn (Seinfeld) have SED congenita. Verne Troyer (Austin Powers, The Imaginarium of Dr. Parnassus) has cartilage-hair hypoplasia. A few (though not many) types of dwarfism such as the latter result in a compression of the vocal cords, hence the stereotype that all dwarfs sound like they’re on a helium, as promoted by The Wizard of Oz and other films of that era.

WHY DO YOU SAY “DWARF,” & NOT “MIDGET” OR “LITTLE PERSON”?

I choose to use “dwarf” to describe myself because achondroplastic dwarfism is my diagnosis. Granted in medicine, the most accurate terms – such as having a skeletal dysplasia – are rarely known let alone understood by laypeople. Little People of America, which primarily deals with the social issues facing individuals with dwarfism, define a dwarf as anyone below a fully-grown height of 4′ 10.”

“Midget” was made famous by P.T. Barnum as a term for someone who was proportionately short-statured (often due to growth hormone deficiency), but today this term at best sounds antiquated and is usually demeaning. The root, after all, is “midge,” a common word for a little fly. In thisNewsweek column from 1991, Cara Egan writes:

The problem with the word “midget” can be compared to that of the word “bitch.” Both words have justifiable meanings in the proper context, but over time they have acquired associations that are sinister and hurtful. Sometimes I’ll be walking down the street and I will hear someone snicker, “Hey, look at that midget.” When this happens, the word takes on a non-human aspect, as well as connotations of stupidity and unworthiness; as if the deficiency in my height equates with a deficiency in my intelligence or character, or negates my right to walk down the street altogether.

Oddly enough, “sinister” is a similarly problematic word, as it now means indicating evil but in its language of origin is the word for “left.” (Sinistro is the Italian word for “left.” The double-meaning of “right” as both a direction and a state of correctness in all Latin-based languages is no coincidence. Left-handed individuals were forced to use their right as recently as 1990 in Europe and the United States, and continue to be throughout Asia and Africa.) When it comes to labels, it’s more important to focus on the intention behind the usage. Most people who use the term “midget” are completely unaware of its connotations or history.

I know many people who embrace “Little Person” and/or “LP” because they are neologisms born out of the empowerment movements of the 1970’s and 80’s. But to me, they sound too damn cute. I’m all for a healthy dose of cuteness in everyone’s life, but “cute” is the most frequent description dwarfs hear intended as a compliment. And it can be so patronizing. In the same way many women endure being called “Sweetie” and “Honey” not only by loved ones but also by colleagues and bosses, most young adults with dwarfism endure their peers calling them cute and only cute. Never sexy or slick. And just as a man once took the tire iron out of my mother’s hand as if taking over the job for her were a primal urge, Cara Egan writes of the numerous people she encountered who picked her up without asking, especially in college.

Of course, “dwarf” is hardly free of negative associations. Norse mythology, German fairy tales and J. R. R. Tolkien use the word “dwarf” when referring to a mystical race of people that are fictional yet inspired by the medical reality. Webster’s Dictionary defines it as “a small legendary manlike being who is usually misshapen and ugly and skilled as a craftsman.” In college more than ever, I was asked if I felt any connection to the magical history of dwarfs. For the record, let me repeat: Um, no. (More on that here.)

At the end of the day, all labels are insanely problematic. It’s almost always a matter of choosing the lesser of many evils.

HOW DOES LIMB-LENGTHENING WORK?

Limb-lengtheningwas invented in the Soviet Union shortly after World War II by Dr. Gavriel Ilizarov. The procedure involves breaking a patient’s bone and drilling metal rods around the break from which a scaffold-like frame is built. By pulling the frame and thus the break apart, often at a rate of 1 mm per day, the bone attempts to heal by generating new bone. It’s a game of staying one step ahead of the body’s ability to fully heal. Stretching the breaks too quickly can result in too little bone being generated. Stretching too slowly can allow the bone to fully heal and often the tension placed on fused bone results in a fissure. After the lengthening process (3 to 5 months), the patient continues to wear the frame as the new bone fully consolidates (5 to 7 months). After the frames are removed, the patient wears casts for up to 2 months. I had my tibias lengthened 6 inches (15 cm) over the course of a year, starting at age 11. My humeri were lengthened 4 inches (8 cm) over the course of 8 months, starting at age 13. My femurs were lengthened 5 inches (12.5 cm) over the course of a year, finishing at age 17. This entire process lasted 6 years, including a total of two years in a wheelchair, constant physical therapy and supplemental surgeries to try to repair my anterior tibialis tendons, which were ruptured some time during the first procedure.

In my opinion, yes. First of all, after undergoing limb-lengthening, patients still carry the gene mutation for dwarfism. Any children I have biologically will each have a 50% chance of having achondroplasia.

Furthermore, rarely does any type of dwarfism involve merely being shorter than average. Achondroplastic individuals, for example, face complications such as hydrocephalus, chronic back pain, bowed-legs, sleep apnea, chronic ear infections, hypersensitivity to anesthesia, and an increased risk of paralysis due to a significantly narrow spinal column. Spinal stenosis can develop in adulthood and almost always requires a laminectomy. Hypotonia (low muscle tone) is also common. Women are more prone to developing uterine fibroids and must almost always give birth via C-section. Limb-lengthening can correct and/or relieve some of these complications, but not all of them. Other types of dwarfism involve complications that render the individual ineligible for limb-lengthening.

Limb-lengthening has reduced many of the physical challenges I was set to face in life, and my physical differences are far less visible than they used to be. But I am frequently asked by my pre-school students why my hips sway when I walk. Children, colleagues, job interviewers and drunken men in the subway have stared at my scars before asking about them. Sometimes these encounters tick me off because I just want to get on with my day and not feel like a walking science exhibit. Usually, however, they inspire me to answer well-intentioned questions and dispel any misconceptions. Always, they cause me to take notes in my head about the world in which my children are going to grow up, whether or not they end up having achondroplasia.